Rare cancers – more common than most people think

Around 4 million people in the European Union are affected by rare cancers. Despite the rarity of each of the 186 rare cancers, they represent in total about 22% of all cancer cases, including all cancers in children, diagnosed in the EU27 each year.
Rare cancers are classified in the group of rare diseases which is defined in the European Union as diseases with a prevalence of fewer than 5 cases out of a population of 10,000. As such, patients with rare cancers are faced with particular challenges, including late or incorrect diagnosis, difficulties finding clinical expertise and accessing appropriate treatments, difficulties carrying out clinical studies due to the small number of patients, possible lack of interest in developing new therapies, high uncertainty in clinical decision-making, and the scarcity of available registries and tissue banks.
Rare Cancers Europe (RCE) is a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda and to implementing 39 political and stakeholder recommendations.